When Should the Chronically Ill See a Doctor? Here's a Guide

I’ve lived with chronic illness for a long time. (Chronic Illness includes chronic pain.) Deciding when to go to the doctor can be a challenge. For example, about six months ago, I developed a nagging pain in my neck. It hurt even when I wasn’t moving. I assumed I’d pulled a muscle, so I toughed it out for two weeks. Then I went to the doctor. It turned out I was right. It was only a pulled muscle, and it resolved in another week.

But when the same thing happened with my knee and I waited several months to go to the doctor, it turned out I’d torn my meniscus in two places and I could have benefitted from receiving treatment months before I finally got myself to the doctor.

One reason I wait so long is that, due to several ongoing medical problems, I go to the doctor a lot…and I’m weary of it. I’m certain that if I were in good health, I would have seen a doctor about that knee within a week.

Before I offer these suggestions, I want to make it clear that I have no medical training. This piece is based on my personal experience and from what I’ve learned from the thousands of people who’ve written to me (some of whom are doctors). I also want to point out that many medical providers have hotlines where you can describe your symptoms to a nurse and get feedback on whether you should see a doctor and, if so, whether it should be right away.

What follows are the guidelines I’ve developed over the years. In deciding whether to go to the doctor, I’d ask these questions:

1. Is the symptom at issue a familiar one, meaning is it one of the ongoing symptoms of your chronic illness, but is simply more intense than usual?

Unless the intensification falls under #2 or #3 below, you could wait a few days and monitor the symptom. It may simply be part of the ups and downs of the symptom parade of your chronic illness, and so may improve on its own.

I had this happen a few months ago with a number of my ongoing symptoms. I said to my husband: “You know, if I weren’t already sick, I’d make an appointment with my doctor and ask him why I feel so sick!” Because all the symptoms were familiar ones, before making an appointment, I decided to cut back on my activities. I stayed in or on the bed for several days. The result was that the symptoms dropped to a familiar level.

Reflecting on what happened, I realized that I hadn’t been taking as good care of myself as I usually do. I was engaging in “activity creep”—doing more and more and ignoring my body’s pleas to rest. After listening to my body for a few days, my symptoms became less intense, and so I didn’t go to the doctor.

2. In contrast to #1, has one of those ongoing, chronic symptoms suddenly become so much worse that it feels as if it could be the sign of a new illness?

The line between #1 and #2 may not always be a sharp one, but it could be an important one. Number 2 differs from #1 in that, with #2, there’s not simply an intensifying of a symptom. Instead, there’s a change so dramatic that it feels as if it could be unrelated to your current illness.

In this case, it’s a good idea to go to the doctor. One of the difficulties you face as a person with chronic health issues is that a new, even serious, illness can appear but go ignored because you assume it’s part of your ongoing chronic illness.

If you’re not sure whether what’s happening falls under #1 or #2, out of an abundance of caution, make that doctor’s appointment.

3. Is your chronic illness one that could be life-threatening should one or more symptoms suddenly become severe (for example, asthma or diabetes)?

If the answer is “yes,” see your doctor immediately. In fact, what’s happening may warrant a trip to the ER. And this is important: if you’re not sure whether any of the symptoms of your chronic illness fall under this category, ask your doctor before the issue arises.

4. Do you have a new symptom that’s a normal part of life for everyone, healthy or not?

I’m referring here to symptoms such as shoulder or wrist pain after working at the computer for a while; stiffness when first getting up or after exercising; nasal congestion; an upset stomach; a headache.

If the answer is “yes,” you could wait a few days and see if it clears up before deciding to see the doctor.

5. Have you suddenly gained or lost weight without knowing why?

Make an appointment to see the doctor. It could be the sign of a new illness—especially if it’s unexplained weight loss.

7. Lastly there’s the list of reasons to go to an ER immediately:

sudden, severe chest or abdominal pain;

other signs of a heart attack or stroke;

trouble breathing;

heavy bleeding;

a bad, wide-spread burn or other severe injury, especially a trauma to the head;

poisoning;

a severe allergic reaction to something;

coughing up blood.

Most of us know intuitively when it’s time to go to the ER. As I write about in my latest book, when my husband began to have an allergic reaction in which his tongue started to swell, we went to the ER immediately because swelling in the mouth can lead to trouble breathing. It’s a good thing we went.

***

I hope these guidelines have been helpful. I end with this: If you’re in doubt as to whether what’s happening warrants a trip to the doctor, err on the side of caution and make that trip.

Such important points, Toni! What you said to your husband (“If I weren’t already sick, I’d make an appointment with my doctor and ask him why I feel so sick!”) really rings true for me, too.

It's common for those living with chronic illness to "normalize" their ongoing symptoms as time goes by. As my pain specialist once observed to me, I tolerate the kind of debilitating pain every day that would send the average (non-pain-patient) person rushing straight to the E.R!

I fall into the "it's just more of the same" group. Especially since getting an appointment with Dr involves going thru layers of people and explanations of why I am calling. After about the fourth round and still waiting for call backs I say oh forget it. If I'm not bleeding, I'm still breathing, and the house isn't on fire it'll be fine.

The hardest part for me when making the decision to go to the doctor is the fear of dismissal of my concerns. I hear "oh, you'll be fine in a few weeks" or "you know, all your test results are normal, so there's really nothing we can do" all the time. It is hard to trust your instincts when the doctor puts you down for trying to trust your instincts! I've been telling my doctors for six months that something was wrong and finally, after two trips to the ER, a full battery of tests confirmed my fears and I've added yet another diagnosis to my list. Vindication is nice, but I wish it hadn't taken so long for the doctors to believe me.

This is almost eerie for me. I had a severe set back due to the stress I'm having with my daughter. So when I started having chronic diarrhea terrible times a day I chalked it up to you just been stressed. Many years ago pre fibromyalgia I had been diagnosed with micro scopic colitis as a doctor explained to be microscopic because they really don't know what's causing it. The medication he put me on worked and I was fine. I was just so miserable couldn't go anywhere for fear of having an accident & decided I needed to see my Dr. My appt is tomorrow. The bad thing is that while I was feeling so terrible and sleeping all day I got so mixed up that I missed 2 Dr appt's with other Dr'S & didn't even realize it until several days after I'd missed the 2nd appt. I am so embarrassed that I did this. So I'm a no call no shoe for both of them. Since they are all in my medical group I know my PCP is going to ask me about them tomorrow & I don't think they will understand what happened. Normally I tell my husband about my Dr appt's he will wake me up & if I can't get up he calls them I didn't tell him about either of the appt's. This is not the norm but it is normal for me to cancel appt's the day of the appt. how can we give 24 hour notices when we don't know what we will feel like every single morning. It's not like having the flu or a bad cold when you know you are not going to feel good the next day. This is a major issue for me and one that stops me from making Dr appt's. Plus the other thing that I'm sure everyone feels is that our entire life revolves around Dr appts. I had weeks where I had some kind of Dr appt Monday through Friday. I've also had many days with 2 appt's on the same day. Thank you for the advise it helps to know that others understand that we don't just decide we don't feel like going that's not an option. Also I've had some really bad experiences with Dr's that I don't know if I can mention on this site. It's has noting to do with legalities it's just very hard to know what you can & cant say. Thank you so much for your great advise

There is a group you forgot, the one I fall into. Those of us who have a chronic illness so severe that we are bed bound. No matter what new symptom or old symptom but it's getting worse, there is no option to go to a doctor.
At the moment I have so much pain that I'm balancing on the cord of life every night. I can not hold on much longer. There is no doctor I can go to. ER will treat you as a pill seeker and send you home with a Valium.

What is your advise for this group Toni? The bed bound? The severely ill?

This must be so hard. I know what it feels like to think you can't get to the doctor...when I feel that way, I drag myself anyway -- always finding someone to drive me...so that's one possibility -- getting someone to take you.

If you feel you simply can't go, I know of doctors offices who, when a person calls in that situation, will check them in ahead of time so that when they arrive, they can go straight back to a room.

That's the best advice I can give you. I'm hoping that someone else reading this can chime in with help too.

Regarding bleeding, I might add bleeding from rectum or vagina/postmenopausal bleeding. I went on for several months with rectal bleeding because I was uninsured. Seeking help at hospital er's had me believing that it was hemorrhoids. I found a community health clinic and was referred to a colorectal specialist who diagnosed it as ulcerative colitis and pre-cancerous polyps. It took a long time to arrest and control the disease. Being persistent in seeking help saved my life. Say what you will about what's called Obama Care but I wouldn't be able to have regular colonoscopies or medications what I'll be on for the rest of my life. Please don't ignore bleeding issues or give up on finding help.